I have a theory on Lyme vs. MS, etc

I am not a doctor nor do I have training in the medical field. What I am about to say was put together in my brain based on research I have done and personal experience.

Multiple Sclerosis (MS) means "many lesions". What causes "many lesions"? The doctors can not tell you what causes them. They (i.e. MS) are a "disease" that doctors treat the best they can with medications to relieve symptoms when they have no other explanation as to what has caused these symptoms and lesions that appear on the brain and/or spine. They don't just appear. SOMETHING has caused them. These lesions are, in simple terms, scar tissue from the myelin sheath that protects your nerves trying to heal back after being attacked by your own immune system. SOMETHING has set this off. My opinion is that "multiple sclerosis" (THE DISEASE) is not really a disease, but is a symptom (the many lesions on your spine or brain are symptoms) of an underlying condition. Some people are "lucky", and are found to have Lyme disease or some other disease that tests positive that can be treated and these lesions and symptoms go away. Yes, that person had "multiple sclerosis" (because they did have lesions on the spine and/or brain, that is unrefutable by MRI), but the "MS is cured" (which doctors say they can not do).
So what I'm trying to say is, anyone with lesions on their spine/back has "multiple sclerosis". But my opinion is that multiple sclerosis (the symptoms, not the disease) can be cured IF the cause of it is found. Those who are on life-long treatment for MS simply have an underlying disease that has not been found.
I can't wait to hear some feedback on this. Again I state, I HAVE NO MEDICAL TRAINING. Do not take this to your doctor and say that some cuckoo from the internet said this. But I would love to discuss what others think!

I think you are on to something. I have Fibromyalgia/Systemic Lupus, and all the drs. know about these are to treat the symptoms. There is no pill that can cure it. It is a disease,symtom, that attacks your own immune system and connective tissue. Keep on with your research and maybe you can Help us all. Good luck and GodBless. DonnaG

I have the same theory based on my research as well. There is enough research to support the fact that Lyme can cause lesions.My story is case and point. I found out that I have Lyme disease.When accidentally a doctor discovered alesion in my spinal cord from one MRI and the second MRI showed them in my brain. I have no SYMPTOMS of MS. Symptoms only from Lyme. I am a firm believer that the Lyme caused the lesions. Now, I am waiting to find out the result from my spinal tap last week indicating if it is MS or not. Now here's the kicker. I am prepared for the MS diagnosis because I have Lyme and know that some doctors/researchers have concluded that Lyme may be involved in the development of MS. The question ultimately comes down to how to treat? The drugs for MS are not what is good in the treatment of Lyme. My neurologist did say to me that if it turns out to be MS "I am lucky" because we caught it before I developed symptoms and we can prevent me from developing symptoms.Essentially he said he has not diagnosed any MS patients through a spinal tap in ages, as his patients already come in presenting MS symptoms. I feel like I am a case study in the making. We ACCIDENTALLY found lesions without looking for them or suspecting them. I wonder how many of us Lymies, if we had an MRI would show lesions?

I agree very much with the Lyme/MS theory, hopefully more research in Lyme Disease will confirm this. Also there are issues to in how Lyme and the co-infections can be passed on. Its said that it can be passed on by other transmissions other than by a tick.

I read somewhere that the kind of fluid that is found in the lumbar puncture can differentiate between MS and Lyme, and also that Lyme has more rheumatoid symptoms where MS is not. That is what i read YET I believe that with all the different kind of symptoms that people have with lets say something like HIV, that the MS and Lyme differentiation is also controversial.

I read about Montel Williams fight against MS and how caved in he is, with all the pain he's going through, knowing what a tough guy he was in his TV host days and it made me really wish that the medical research community help all the MS patients worldwide to find the cause.

Nexis,
I thought it interesting that although the neurologist felt certain that he has "classic MS symptoms", she is doing blood work to rule out such things as Lyme, leptospirosis, HIV, vitamin deficiencies, and who knows what else. I think without admitting it, some doctors have a hunch that there is more to it than this. They are just so scrutinized by government control that they have so little say and so little freedom to "think outside the box". I think the only reason this neurologist is even checking other things is because they are a research hospital, which I hope will be to our advantage. I don't intend to ever stop with "He has MS, here is the treatment for it". His life and well being are too important to me for that.

Just curious...what differentiates your symptoms of Lyme versus symptoms of MS? And why did you have an MRI of the spine to begin with?

I had neck pain that went on too long. The orthopedic doctor asked for an MRI of my spine. He suggested a cortizone injection as treatment. When I went to get the cortizone the doctor looked at my MRI and saw a lesion in my spine. That led me to a neurologist who asked for an MRI of the brain. I have no symptoms of MS, though I did have tingling in my fingers and toes a few days AFTER my cortizone injection.

Moving on... I got a call from the neurologist to review my lumbar puncture results. He said I have antibodies for MS and I am at risk for deveoping symptoms if we don't treat preventably. I should feel lucky. I asked him about working with my lyme doctor and he said, "i don't believe you have active lyme". Here we go....

I am not a doctor nor do I have training in the medical field. What I am about to say was put together in my brain based on research I have done and personal experience.

Some of the most valuable "discoveries" are not found by the experts! After all it was a mother with sick children in Lyme CT that suspected something was going on...not the doctors! Many valuable contributions in different fields have been made by laypeople with good observational skills who asked the right questions and who thought outside the box.

I am very interested in the MS/Lyme connection. Years and years ago, I was told by a nurse that we lived in the MS belt in the US...I thought the comment strange (as I had no ties to MS but despite this remembered that comment all these years).

Coincidentally, it was about that time that Lyme was discovered in this country...and hmmmmm, we live in an epidemic area for Lyme!

Multiple Sclerosis literally translated means multiple scars. So what? It's just a name for a condition with similar signs and symptoms, and maybe a single etiology. Doctors have to refer to it by something: they could just as well call it That Neurological Disease.

True, other conditions or diseases can cause neurological symptoms and CNS lesions. That is why the one doctor is running other tests and bloodwork to rule out other known causes. Far from being some sort of conspiracy, where he is bowing to the powers that be, it's good medicine. It would be irresponsible if he didn't check for other conditions.

funnymommy:
If you're neurologist is telling you that, if you have MS, he can completely prevent symptoms, he is seriously misleading you.

I had to have brain MRIs, and also a spinal tap, and I was not found to have any MS lesions or onglical bands (however you spell it) in my CSF, but they DID find a full positive lyme test in my CSF, with a 1 IGM and 7 IGG blood lyme western blot still. If you had onglical bands, then you would have a positive MS diagnosis, and nota lyme diagnosis, did you ever have any western blots through igenix? Did you have any bands besides 41?
Just curious. Even with MS, some don't have the onglical bands, so they would then seek out more regarding Lyme or similar diseases mimicing, but, with a positive CSF to the ongincal bands, it is a MS diagnosis.

The 41 you had, was cross reacting with the viral load, I think the neuro is right, unless there is other evidence to point you to Lyme now, as the symptoms are so similar, your viral load can cause some of the symptoms and the 41kd band, but even your co-infections were negative, ususally a LLMD for some sort of 'by the books' diagnosis, would take into consideration a positive co-infection, and consider a Lyme diagnosis.

I was also positive (in blood) for Bartonella H, and Babesia. If they would have not found anything via blood work or CSF for Lyme for me, yet found MS onglical bands, I would have had to face a MS diangosis is all I'm stating. You can read more on some of this by searching Brian Fallon, and Columbia University, they may even have studies you may be able to participate in depending on your clinical findings.

I LOVE this theory...it kind of explains the path my body has taken...Lupus diagnosed in 1993 - MS (suspect) in 2003 (they found lesions in my brain) - stopped taking my Lupus meds (wanted my body to be free of any drugs so the doctor could get a better idea of my issues) 6 months before I went in for my MS visit. Outcome, Lesions yes, MS no.

Interestingly enough I have had NO lupus flares since I've been off the placquenil! During 2010 (springtime) I had a very bad month and thinking I had a flare, went to the doctor who, after doing all the tests, not only said that my Lupus was still in remission, I was diagnosed with Fibromyalgia.

The remarkable thing was - I no longer had lesions on my brain!!!!! The only thing we can figure is that back in 2005 I was hospitalized with an almost fatal case of meningitis I was given 2/3 different antibiotics.

Now, in 2011 as I've been reading more and more about Lyme, I think this may be my problem. I will be asking my doctor to re-test for lyme...